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Frequently asked questions

What is LifeGene?

The LifeGene project is one of the largest health studies to be performed in the world. LifeGene is entering a viable and active research phase, leaving the visionary phase behind. The project will combine advances in modern biotechnology with information on people's health and lifestyle. At least 500.000 individuals are to be enrolled from the entire country.

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What distinguishes LifeGene from existing biobank projects?

LifeGene goes several steps further than current collections of samples that are limited to specific geographical regions of Sweden, specific ascertainment schemes (such as information on individuals once they become the target of health care or because they have had a specific exposure), or are limited by size. Modern bioinformatics and state of the art biobanking will be applied in the project.

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What are the benefits of LifeGene?

LifeGene will constitute a platform for a myriad of biomedical research projects. Researchers not only in biomedicine and biotechnology but also behavioral and social sciences may benefit from access to LifeGene.

Researchers will be able to work within a much broader and deeper scope than ever before. This will obviously lead to more reliable conclusions between health and other variables such as genes, geography, occupation and medical history.

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How is the project organized?

The LifeGene project is coordinated from Karolinska Institutet by Professor Nancy Pedersen together with the chairs of the working groups, the Executive Committee and the Reference board.

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How is LifeGene financed?

Startup funding was received from Karolinska Institutet, the Stockholm County Council and the Swedish Research Council. Additional funding from AFA Försäkringar and Torsten and Ragnar Söderberg foundations (see News for more information) enables the continuation of the project and the pilot phase, conducted 2008-2009. The LifeGene project is a long-term project. The majority of funding is presumed to be obtained from private donations.

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How will information be given to study participants?

Ethical approval of study protocol(s), study participant information and informed consent form must be obtained. Each study participant will be given adequate information regarding the objectives and the procedures of the project as well as any risks or inconvenience involved before he/she enters the LifeGene study. Each study participant will be informed that participation is completely voluntarily.

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How will LifeGene keep personal information confidential?

Data and sample collection will be for research purpose only. All questionnaire and health data will be obtained in coded format. The LifeGene biobank will contain both biological material and associated information about individuals. It will have an organization with explicit procedures for quality assurance, including systems for storage, coding and registration. All sensitive data will be encrypted to ensure the integrity of the study participants.

Are there risks involved in participation?

No. Participation in LifeGene does not involve testing any specific treatments or medications. If indications of a medical condition should arise during or as the result of a health exam, the participant will be informed of this.  In such case, LifeGene staff will provide the participant with information as to where he or she can seek appropriate medical attention.

Who will be permitted to conduct research on LifeGene material?

Because LifeGene will be a globally unique resource, it will be open to research by both Swedish and international actors.  However, all interested researchers must apply for access to LifeGene's research materials.  Research proposals must be of a high standard and fulfill certain requirements.  Regardless of the principle researcher's nationality, a Swedish university must lie behind the proposed project, which must be examined and approved by an ethics committee at a Swedish medical university. If these requirements have been met, an application may be submitted to LifeGene, where the potential medical value of the proposed research will be weighed against the finiteness of the biological material before the final permission to access material is granted.  Companies conducting medical research, such as prescription drug companies and bio-technology companies may also apply to LifeGene, provided that the proposal is made by a researcher at a Swedish university and the requirements described above are met.

Will anyone earn a financial profit from LifeGene?

LifeGene is not a commercial enterprise.  Nor will LifeGene apply for any patents on the research conducted on its basis.  However, individual researchers may choose to seek patents based on the research they conduct from LifeGene.  Only in this way will the research conducted from LifeGene material be able to leave the laboratory and lead to the creation of new medications and medical products.